Side effects of Vidaza

[anne&dean]

I keep praying every day will be better, but seems like Deans spirits are getting lower. I went in yesterday and he wouldn't even let me give him a bath. The dr. had came in early and told him the platelets were not working at all, he decided he was dying. The have put him on a wide specturm of anitbodics, which means they are giving him several antibodics to cover any and everything. Praying they will soon get the crossmatch for his platelets, they say it takes 3 to 4 days as they have to be very careful. He got 6 units of blood and 6 of platelets Thursday. Yesterday he received 2 units of blood and 2 of platelets. The doctor came in again late yesterday and told him they were going to give him plasma, he got scared because he had never taken it before, and was calling me to come up there. I went back to hosp. and stayed till 11pm last nite, he had no reaction. His stools are still the same, black liquid, 6 to 7 times aday. He started running fever Thursday nite, and it is just a low grade fever, nothing we have not been putting up with for months.
I have been considering the idea of hireing a male nurse Anne and have decided that the first of the week I am going to do this if things are still the same, you just reinforced my thoughts.
He ex-wife called yesterday she lives 4 hrs. away asking if she could come and see him, we have always been on a very friendly, as my family says unusual relationship. I talked to him about it and he said if it was ok with me, it was ok with him. It was a hard decision for me but I finally called her back and told her to come when she can, you no the old jealousy bug tried to get me, but I remember when my ex-husband died and the pain and hurt I felt, because when you live with someone for 12 years, you will always care about them.
The hardest part of yesterday was his crying and telling me he loved me but it was time for him to go! I got hysterical and had to leave the room. I know his spirts are low, as this is the longest he has been in the hospital, and it seems the blood and platelets are just going straight thru him.
Deans blasts in April had increased to 25% which is considered by some drs. as acute lekumia, aml, and he had a mild heart attack week before last. He has afib, and has had 2 by pass surgerys, in previous years, the last one being in 2000.
Hopefully today will bring some good results, from more blood work they did yesterday, and just maybe the match will come in for the platelets.
Yes Anne please put us on your prayer chain, because I firmly believe that everything is in Gods hands.
Thank you all and God bless, time to get my shower and get over to hosp.
Ann

[anne&dean]

Well, we got a little good news yesterday, they have found a parial match on his platelets, hopefully things will start changeing. Had 4 units of blood and 2 of platelets yesterday, his spirits still very low and can not convince him that he will be coming home. Will be so glad when Monday comes as his regular dr. will be on the hospital rounds this week , and he has such a great bed side manner. I think it will help Dean alot. The bad side of yesterday was he seemed to have more diarea then he has been having, it embarreses him so, because he has no feeling in that area, and usually messes up the bed, that is why I try to take care of the cleaning of him and bed, he needs to have some pride left. I get him up and to the toliet every two hours but yesterday, it changed its course and he had one in bed. Poor baby it was a mess and he didn't even know it. I got him up for the regular schedule bathroom visit and it was every where. I had to call nurse and get her to unhook him from everything so I could put him in shower. They changed his diet alittle yesterday though it is still liquids, he was able to get some cream of chicken soup, and that made him happy. His son came in yesterday from beach and went up and seen him, and Dean told him that he was sorry but he probably wouldn't be back home, that this was it, and he hated to leave but it was time. Thank goodness his son stood up to him and told him , no he would be back home and not to talk like that.
Well time to get my shower and get up to hospital just wanted to say thank you all for your prayers and listening to me.
Ann

[ann]

Are you Ann with an e or just plain Ann like me? I will continue to pray for you both. I told my husband about you last night and he said to tell Dean to never give up. His time will come soon enough but not to give up. I reminded him of how he was last year and he laughed and said he just was never going to remember bad times. I love that! I hope that your regular doctor can give you some answers since he knows Dean better than the doctors who come in on the weekends. As the platelets are given more often as well the transfusions I am told the cross matches are harder to do. We are so thankful for each day, it may be the last but we try to make it the best. I will continue to pray that you will make it through this valley of the shadow of death and seek the sunshine on the otherside. God bless you both. Keep us posted. I am sure that many on this forum is praying also.
Take care of yourself.
ann

[anne&dean]

Hi everyone,

It is so good to post something positive. Deans platelets were up to 32, the most they have been in a long time. An hour after he had taken 2 more units of blood they did his counts again and his platelets were up to 34 and his hemog. was 9, hasn't been that high in ages. they will take another check in about 6 more hours.
thank you all for your thoughts and prayers.

ann

[Neil Cuadra]

Ann,

Thanks for letting us know about Dean's improved counts. It's very welcome news!

[anne&dean]

Just got off the phone with nurse at hospital, Dean did not have to have any blood, except the first he had yesterday morning, his counts are holding. They just took a sample, so we will see what they are. This is such wonderful news, I am so happy. And this week his regular doctor will be making hospital rounds, so this will give Dean more hope. Will post again tonite when I get home from the hospital.

Thank you all again for your prayers and being here for us.

Love
anne

[ann]

Wonderful news! Just keep up the good thoughts and prayers. Hope that he is beginning to fight this terrible disease. Give him our love and we will keep praying.
ann

[mausmish]

That is great news, Anne, and should put Dean in much better spirits.

[launch]

Dear Anne,
I was glad to see the post from the other Ann when she stated... "I Hope that he is beginning to fight this terrible disease..." My husband, Ron was diagnosed with MDS Feb'09. He was very very sick. It was all "Doom and Gloom" and there were many nights I cried after Ron went to bed. But, with Lots of Prayers, God's Mercy, and wonderful Doctors and Medicine, Ron is doing wonderful right now. His last Vidaza received was mid April'10. He is now on the "Watch-and-Wait" with continous monitoring of blood and Bone Marrow biopsy when necessary. But, back to Ann's post... about hoping Dean is beginning to fight this terrible disease.

There was a point, but it wasn't until around Feb'10 that Ron up and said one day... that's it!!!! I am not going to let this thing beat me! He started walking daily... and was even walking the days he had Chemo (Vidaza) treatments. He planted a garden, etc.... (very small one), and he even starting helping A LOT at the HOUSE!!!! He continued to get better through the fight....

I pray for you and Dean to regain some normalcy and return home very soon...!!!! The hospital is definately depressing.... So, the sooner out of there, the better!!! We'll keep you both in our prayers.... Cindy

[anne&dean]

Thank you all for your post, it helps alot to have someone that knows more of what you are talking about.
The night nurse gave Dean to units of blood and let it run for 7 hours, usually they give it to him in 3hrs, this was Monday nite, so they were unable to do his blood test until late. His platelets, are going down again, but his blood was not as bad to need any. He ended up getting 2 units of platelets last I had talked to the nurse at about 9 pm last nite. But his liquid bowel movement measured out the same as it had been after I got there yesterday morning, it was real discourageing.
His doctor says he thinks he is improving, I tend to disagree, maybe because I as seeing him more than the doctor does and looking at the read outs of his blood test everytime they do them. His platelets got back down to 22 yesterday, and last nite they had made it to 24, they had said they wanted to keep them in the 30 range, then yesterday his dr. said the partial crossmatch they were using was hard to get. It really made me mad, I felt like they were not doing all they could. As Dean has no feeling in his bottom area due to their mess up over a year and a half ago, it is very embrassing for him when he messes the bed. That he one reason I try to stay at hospital 8 or 9 hours. I wish he would start trying to fight more but he just want. We have been dealing with this since 08 and I think the fight has gone out of him. I try to tell him funny things the grandkids have done, and how our cocker spaniel is stealing the tomatoes soon as they get half ripe. I will not talk to him about his dying, because I just can't. Now we are going on 3 weeks in the hospital and it is the longest he has ever been there. And where are his kids, they just come when I call and say that he is in worse shape, stay a couple of days then leave back to their happy life. They don't even call everyday. When this all started his daughter came down every time it was chemo week, now she is so tied up doing other things. All I ask for is for them to call him every day, and have told them so but it doesn't do any good. I understand they live 3 1/2 hrs. away, but sorry if it was my parent I would be here.Well thats enough of my ranting and raveing, kids are just different now days I guess, even though they are both in their 40's.
Hopefully today will be brighter, I am sitting here wanting to call the hospital and see what last nite was like but afraid to that there will be bad news.
I just called the nurse his platelets have gone back up to 30 at 2:30, his hematcrits are down to 23, but the dr. said not to give him any blood, not understanding this. His bowels had not moved any during the nite, so hopefully we are haveing a change again. The nurse just drew his blood again so by the time I get over there they will have a new reading.
Will keep you all posted, sorry I sounded out so, but it was good to get it out of my system.
Thank you for all your hopes and prayers.
anne

[launch]

Hi Anne,
I sent you a Private message... please let me know when you receive it.... I keep you and Dean in my prayers.... Hugs, Cindy

[anne&dean]

I am waiting on phone now to talk to my husbands nurse, so let me start by telling you about yesterday, we got a big scare, thought Dean had a heart attack, right after I got him out of the shower and back to bed he started having pains in his chest. The dr. had just started rounds, and came right in, they gave him nitro, did a ekg, and took blood. He had turned real pale and he never complains, and as this same thing happen before when in hospital, we all felt sure it was his heart. As Dean has a do not reseate on file, I thought well this is it. Called my son and him and his wife were about an hour away and said they would be right there. Figured I would wait on calling his kids till I knew for sure as they are 3 1/2 hrs. away. Well the reports are came back negative, but the doctor thinks it was because his blood had got so low, and they started giving him blood right away.
His bowels are doing better yesterday the 9 hours I was there he only had one bowel movement and the liquid was not as black as he has been being.
As he did not have a transfusion yesterday, only the one they let run 7 hours and had started at 1 am on the 29th. Blood report from 1am on the 30th showed his hematocrit was 23, but report from 7 am showed it had went on to 24. His platelets had fallen again, but the nite doctor said no transfusions. When his regular doctors came in they started transfusion right away, and said they were also going to give platelets, he recieved the blood but no platelets. I asked the nurse and she said she did not see any orders for them. She said maybe it was because he has to have special platelets and they would send then when they got them. At 9 pm last nite he still had not received any.
Ok just got off phone with nurse, only one small bowel movement and it was brownish, his platelets finally came in late last nite and he received them during the nite, they had got down to 21, which they are wanting to try and keep at 30, but at least they got them. His hematpcrit was 26 at last blood draw, they will be drawing again in a few minutes.
The nurse said he had a fairly good nite, not sure what that means.
I have hopes that we are now making a turn around, as he was receiveing 2 to 3 transfussions a day and platelets several times aday. Sort of upset about the platelets, I know they have to come from somewhere else, but you would think that as big as Duke Hospital is that it would have had at least one bag on stand by, not sure how long the platelets are store about or if they have to make them up guess I need to read up on this.
Well looking forward to a better day today, thank you all for your hopes and prayers.
Anne

[Neil Cuadra]

Anne,

You had quite a scare with Dean's chest pains. You must feel like you are on high alert all the time.

To answer your question about platelets, the platelets that people donate last only about a week, while donated blood lasts about 6 weeks. That's why the supply varies from day to day depending on donors, and even a large hospital is more likely to have an adequate blood supply than enough platelets on hand. There is always a need for platelet donors.

[anne&dean]

Well the doctor came in and talk a long time they told us there was nothing else they could do. His iron is building up due to so much blood and it is bleeding out as fast as it goes in.
Dean decided to come home, the doctor said he could stay in hospital, but they would not do anything just make him comfortable if he had any pain. If his heart started acting up which they are expecting to happen they would put him on a morphine drip.
Thank heavens for the nurse at the hospital, he talked with Dean and convinced him he would be happier at home with hospic. Due to a holiday weekend they were unable to get hospic here and wanted us to wait till Monday , but we said no, so they loaded him up with blood , platelets, calicum, etc. and we came home last nite.
We were gonna just tell everyone he was home and not tell them till after the weekend, but his daughter got to asking Dean so many questions he didn't know how to answer so he told her.
Her husband called me back and ask if she could come down today, sorry I was not nice I told him that we really wanted to be just us for the weekend, and he said well it was his daughter and she wanted to come. So I guess she will be here sometime today.
Hospic will be coming Monday, and they will explain everything to us. They gave me morphine drops to put under his tongue in case he started having any pain.
I was so happy this morning he actually ate breakfast, his eating is very poor.
He wanted biscuits and gravy, and he ate two. Then I had bought his favorite candy and he eat that. They have put us on a sliding scale for the insulin and told him to eat whatever he wanted.
So far his bowels have not moved since we come home, he had reg. food last nite and today.
I can see that the blood did not do as good as it had before, he is still real pale, but at least he is home in his recliner with his dogs. This is so much better for him.
I know it is all in Gods hands, but the way the dr. talked it want be many days because the lack of blood will cause heart problems.
Just want to thank you all for your love and prayers.

love
Anne

[Ruth Cuadra]

Dear Anne,

All of our hearts go out to you and Dean. I hope you can find some pleasure and comfort at home. Hospice is a wonderful organization and can help with all of your needs.

Regards,
Ruth

[ann]

I hope that this time together will give you peace. God bless you both and you will be in our prayers. Please keep in touch. Everyone on this forum cares for each other so much. Enjoy this July 4th, the fireworks have been going off for the past 4 nights around our home. We live in the suburbs and there are fields all around us. Thank God for the rains we have been getting so far no fires. My love to you. Take care of yourself.
ann

[launch]

Dear Anne & Dean,
You both remain in our prayers.... Hugs... Cindy

[squirrellypoo]

Thanks for keeping us all updated. I hope that you two can cherish the time you can now spend together in the comfort of your home, for however long that is. I'll be thinking of you both.

[Al's Wife]

God bless you Anne. You and Dean are in our thoughts and prayers.

Love,

Linda

[Gloria J]

Dear Anne,

I hope the familiar surroundings of home (complete with your dogs!) will offer some peace to you and Dean. You are both in all of our prayers and thoughts. Be strong, and God bless.

Gloria

[anne&dean]

Hi all,
Thank you so much for your hope and prayers. Yes coming home was the best thing we could have done. The only problem we have is most of my husbands family lives about 4 hours away, and the last two days has been like a wake (THIS WAS MY HUSBANDS WORDS)! We have had so much company and with the different people coming in from hospic, neither of us are getting any rest. Hopefully today will be different! It is hard to tell people after they have driven 4 hours that they need to go after about 30 minutes. But after yesterday , I plan to do exactly this.
Deans emotions are very raw, and hopefully we will be getting meds from hospic to help control this today, or help some.
He has never complained of pain but last nite he said he was hurting in the upper part of his stomach where the uclers are. I gave him a stomach pill, he said it was a little better, we went to bed both of us completely exhausted at 9:30, Dean was back up at 11:30, he didn't wake me up so I did not know he was hurting. I woke at 2:30 am and found him sitting in his recliner, and he told me his stomach was hurting. I started to give him some of the liquid morphine last nite, but his daughter disagreed with me and said he will be alright. Dean never complains of pain, when he had his by pass surgeries , he took very little pain meds, I should have listened to myself, I know him better than anyone after 24 years together.
His feet are swelling so bad, he wanted to try putting on the elastic stockings we had for him from several years ago, gee had forgot how hard those things are to get on.
Well I gave him the small dose of the liquid morphine, a stomach pill and put the stockings on, got him back in bed at 4am and he is resting now.
From now on I will go with my instincts and not listen to anyone else!
He has slept very little this week, due to inability to relax, and been very emotional, which is expected. We are suppose to be getting a package from Hospic today with a medication called ativan, they say it will help with the anxiety.
He is already taking a sleeping pill at nite and a .5 of xanx. it was 2.5 but the nurse changed it yesterday. He takes the xanx in the morning after meals too.
He says he has enjoyed the company but after 30 minutes, he is ready for them to leave, he is so caring and tender hearted that he want say anything to them, so guess I will have to be the bad guy. I am going to put a sign on door saying please limit visiting to 30 minutes.
Will call nurse today and tell her about the stomach pain, this is the same pain that he had with the bleeding uclers as far as I can tell, think they must be getting worse. His nose started bleeding some yesterday, so I know his platelets are down.
At least he is resting now and I feel better.
Love
Anne

[Al's Wife]

Anne,

I've learned in the past from taking care of ill patients that you MUST stay ahead of the pain. If they are complaining of pain, then it will take much longer for the pain meds to kick in.
God bless you and you are both in our prayers.
Linda

[anne&dean]

Dean left us yesterday afternoon to go to a better place, he is now pain free, and happy. As told by the doctors he had a massie heart attack.

Please do not give up hope on your treatments, my husband had many other medical problems and the mds was just a little icing on the cake. Put your faith in God, he will help you get thru everything.

We had 18 great months after my husband was diagnosed, and he the treatments dacogen were not bad at all.

Good luck and keep your faith.

anne

[Neil Cuadra]

Anne,

Ruth and I are so sorry to hear of Dean's passing. You have our greatest sympathies. MDS stole Dean from you too soon, but he was lucky to have you for your 24 years together. We know from what you've written how attentive and loving you've been while taking care of him the last 21 months since he was diagnosed. We're glad that Dean had chances to say goodbye and got the comforting care you and hospice provided.

Your emotions must be very raw right now but we hope you'll find peace with the memories of your years with Dean before his illness. We're still here to listen and talk if you need us.

[Birgitta-A]

Dear Anne,
My thoughts and prayers are with you at this difficult time. I am so sorry for your loss but as you wrote Dean has found peace.
Warm regards
Birgitta-A